I haven’t posted a real update for a while, so thought I’d do that before I start on a few topics that I’d like to discuss over the coming weeks.

I think it’s safe to say that I am responding well to the Infliximab infusions, as I am relatively pain free these days and all joints are mobile, with little or no swelling. I am still taking 60mg of Morphine twice a day (down from 140mg), but am working with my GP to reduce this. We’ve come to a bit of a standstill at the moment because I do get some pain from my reoccurring Gastritis, but once this is under control with the stronger stomach medication, I aim to become Morphine-free and hopefully will have no underlying pain.

The Gastritis is probably my main problem right now. I had my first episode of this earlier in the year, just before my major flare at the end of January, and it is thought that the Gastritis contributed to this, since the stomach inflammation meant that I was not absorbing my Still’s medication adequately. I now take Esomeprazole and Motilium three times a day and also avoid acidic food and drink, but still it niggles away. A friend, with Still’s and similar gastric trouble, has suggested that it could be related to the IV biologics that we take and so I’m going to look into this at some point. If you have experienced anything similar whilst on any of the IV biologics, please comment – it would be interesting to see if this is the case.

The Infliximab infusions themselves are going well, although I did suffer a bit towards the end of the eight week interval. I noticed that rash, temperatures and some joint pain returned at about five-six weeks post-infusion. As a result, my Rheumatologist has prescribed it every six weeks instead. I haven’t experienced any major side effects from the drug apart from getting a very sore, ulcerated mouth a couple of weeks later. I do seem to be more prone to infection in general though, something I never really noticed with any of the other medications, despite their immuno-suppressant action. I currently have the first cold and throat infection I’ve had for years, so I’m being extra careful.

As I have briefly mentioned in a previous post, I am having some problems with my finger and hand joints being very stiff and painful, especially first thing in the morning. This is unusual in itself, since any previous hand involvement has always been during times of full-blown flare. My only thought is that six months on crutches has put extra pressure on those particular joints, so hopefully it will only be temporary… especially now that I am off crutches altogether! Yep, I felt that they were holding me back on our recent trip to Paris and so threw them into the River Seine (not literally). I need a bit of support from people at times and have the odd spell of vertigo, where my brain seems to forget how to balance without sticks, but I am finally back on my feet and feel like I can only get stronger from here.

I have also managed to get down to 5mg of Prednisolone, the lowest I’ve been since about 2007 if I remember rightly. I would love to get off the stuff completely of course, but for now I am happy with this low maintenance dose and would prefer to get rid of the Morphine. I don’t want to be doing too much too soon, in case I put all this success into jeopardy, plus I have to save some goals for the future right? 😉

All in all, things seem to be on the up (touch wood), but don’t worry – I’ll still find plenty to post about!

Here’s to Infliximab and the future,

Cin cin

L

Ps I have updated the ‘My Story’ page and also added some new Articles to the Articles section.

I thought I’d post a more thorough update on how things have been since my first Infliximab infusion last week, especially since most of it is positive. I noticed almost straight away, the very next day, that I had less pain and was able to move better: things that I had been finding hard, such as sitting up in bed or standing from a chair, just felt that little bit easier and have remained so. I’ve also noticed a slight decrease in swelling around certain joints, my left elbow is straighter and my knees are less restricted. This improvement has been maintained each day and, rather than the rollercoaster of good days and bad that I had previously been stuck on, I seem to have reached an even keel, which is brilliant.

This stability has enabled me to stick to a better daily routine, including with my Physiotherapy exercises. I now have set times for my sessions and have even been able to increase the number of repetitions of some of the easier exercises, without suffering for it. I try and push myself a little bit harder each day, but know to stop when I feel the strain not after it, and this seems to be working. My arms in particular are moving much better than they were and the spasms that I was experiencing in my neck / shoulder / collarbone area have definitely lessened, although it still feels like something is ‘catching’. I also have a better range of movement in my neck, something that has been restricted for months and months!

I’m defintely getting stronger in my legs and am able to bear more weight through my hips now too; I even managed to raise my leg off the bed when lying flat for the first time the other day – an exercise that I’d had particular trouble with – and I’m gradually increasing how long I can hold it there for. Not being able to do this had been upsetting me, so to me this is a big sign of improvement. I still have the muscle wastage at the tops of my legs and around my hips, but I know this is something that will take time to recover and at least it isn’t any worse. I’ve just started to add some resistance exercises to my lower body pyhsio, using therabands, so this should help build up some strength and muscle too. I’m really pleased now that I pushed through the pain and made myself exercise and I’m even more determined to keep it up and not slip back into bad habits. Who knows, maybe I’ll be lifting weights next?! 😛

Walking-wise, I am still mainly using the zimmer frame to get about and managing quite well with it, but I am at least using the crutches every now and again: I chanced a short walk around a shop on them the other day, which was an achievement in itself, although I felt a bit wobbly and it wore me out more than I expected. I’ve been able to manage the stairs a few times (with help), on the crutches too and so have had a few evenings downstairs, which is great. Not only does it mean a change of scenery and better zimmering space, but I’m able to pop in to say hello to my ‘furbaby’ Jasper the rabbit, who I miss like mad. I’m hoping that things are going to get better and better from here, that I’ll be able to use the crutches a little bit more every day and to go downstairs once a day too. I have three weeks until our Dublin trip and it would be great if I could manage with crutches alone.

I still can’t say if all this is thanks to the Infliximab / Remicade or the IV steroids, but any relief, any improvement is a welcome thing. Despite not wanting to get my hopes up too much, I at least feel pretty optimistic about the new medication and I think that’s allowed. The only bad day I have had since starting it has been today actually. I woke up this morning with a very sore mouth and swollen tongue, (which has become increasingly worse), and when I looked in the mirror I had several ulcers/sores on my gums and a strange raised rash-type thing covering my tongue. I’ve also been feeling really weak and shaky, my pulse is racing and I’m exhausted, so for the first time since being in hospital I have slept during the day and am currently curled up on our sofa with a blanket. From the information I was given, it looks like it could be a side effect of the Infliximab or of my immune system being wiped out by it; but hopefully, like so many of these things, it will just be a minor blip and disappear as fast as it came.

Just a quick post. I have posted a poll on the blog’s Facebook Page asking what current Biologic Treatment people with Stills are currently taking, so that I can try and see which drugs are the most widely used in the treatment of Still’s Disease.

The poll here is slightly different, in that you can vote for more than one option, to give you the opportunity to record each Biologic drug you have tried, since I figured this might give us a broader spectrum to base results on.

You can take part in both if you wish!

NB. Please only vote on the poll if you do have a diagnosis of Still’s Disease, Adult Onset Still’s Disease or Systemic Juvenile Arthritis, thanks.

Despite only having to wait a few days to start this new line of treatment, today could not have come fast enough for me! I’ve had a horrible few days pain-wise, which has even made me wonder if the Tocilizumab was doing more harm than good, but I guess that doesn’t matter now.

We set off from home at about 9.30am and arrived on the ward at 11am. I was shown to my room and my nurse came to cannulate me and take the usual blood tests and observations; I also had to be weighed, since the dosage of the Infliximab would be worked out from this. The normal dose is 3mg-5mg per kilogram body weight and I received 600mg, weighing 60kg so quite a hefty dose of 10mg per kilogram! I was also asked a number of routine questions about infections etc, since it was my first infusion, but there were no problems and, once my blood test results came back, I would be hooked up as planned.

After some lunch, my Rheumy came to see me to see how things were. Obviously not much had changed since Friday, but he did explain that it would take a couple of infusions at least before we notice any improvement and reassured me he’d be able to help me out short term for our weekend in Dublin at Easter if things weren’t better by then. I am to keep up with the Cyclosporin alongside the Infliximab, rather than the usual Methotrexate. When I was in hospital, they checked the levels of this is in my blood and it was lower than expected, so it looks like the Gastritis had affected the absorption of my oral medication. I also had a chat to one of the nurses looking after me, whose 17 year old son has Rheumatoid Arthritis. He currently sees my previous Paediatric Rheumatologist, Eileen Baildam, but will have to change to an adult consultant soon. She said that seeing Dr Snowden’s care of me has convinced her that he is the doctor for her son too, so that was nice!

It took a couple of hours for all of my blood test results to come back, but at around 2pm my nurse returned to give me a couple of meds that I needed before the Infliximab; there is a higher chance of allergic reaction with this drug than other biologics, something I was a little bit concerned about because I have serious allergies to a lot of antibiotics. As always, prevention is better than cure, and so they give you a couple of things to try and reduce the chance/symptoms of a reaction. Firstly, I was given a shot of IV anti-histamine and then a substantial dose of IV hydrocortisone; once they had been flushed through it was time to start the Infliximab / Remicade infusion.

The Infliximab came in a single bag, set to go through the line over two hours. The nurse sat with me for the first half hour to make sure I was okay; I did feel quite drowsy but then we realised that Anti-histamines can have that effect too, plus I could just have been tired after not sleeping much the past few nights. I had my observations – Blood Pressure, Pulse Rate, Breathing, Temperature – taken every half an hour throughout the infusion and during the time that I stayed afterwards. My heart rate dropped a little bit (to within a normal range considering that it’s usually high), but everything else was fine. The infusion finished after just over two hours and then there was an extra half an hour for the saline bag to flush it through afterwards. We then stayed for about two hours so that they could keep an eye on me and make sure I didn’t develop a reaction, although this is more likely to happen early on or during your second infusion. Better to be safe than sorry though.

Apart from still feeling very sleepy, I was fine, but they told me to ring the ward straight away if I had any concerns. We left the hospital at about 7pm and had a 90(ish) minute drive home, so it was a looong day for both of us (nearly 12 hours!). As a well-earned treat we stopped off at Domino’s Pizza on the way and ordered 3 courses – A Chicken & Wedges share box, a Medium Stuffed Crust Pizza each and Cookies to share – not something we do very often but it was just what we needed and really hit the spot, plus there’s enough left over for lunch tomorrow!

I feel like I’ve lost a whole day, going from bed – car – hospital – car – bed, but hopefully it will not be a day wasted. My next infusion is in a fortnight’s time and then six weeks after that; eventually they will be once every eight weeks, which will be less hassle than once a month at least. I know I keep saying it but I really, really hope that this is the one to turn things around. I feel so ready to get back on my feet, to get stronger and build myself up even more than before and then to put my mental energy to the blog and other projects I have in mind.

My Still’s Life

My name is Laura and I was diagnosed with Still's Disease at the age of 19, with previous diagnoses of Dermatomyositis at 14 and Post-Viral Reactive Arthritis at the age of 3. Life is a bit of a rollercoaster to say the least, but I'm happy to say that I have had my fair share of highs with the lows. I have currently been off work for over 18 months due to a severe flareup and was getting bored, so I thought that I would try and put my mind to something constructive.

I have tried numerous drugs to treat my Still's over the years, including:

Unfortunately, having one autoimmune disease can lead to other health problems and I have also developed Hidradenitis Suppurativa, Gastritis, Anaemia of Chronic Disease, MVP, PCOS and Migraine, which I post about from time to time.

Happy reading :)

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Food For Thought

Toughness is in the soul and spirit, not in muscles.

~Alex Karras

The block of granite which was an obstacle in the pathway of the weak, became a stepping-stone in the pathway of the strong

~ Thomas Carlyle

Strength does not come from physical capacity. It comes from an indomitable will.

~ Mahatma Gandhi

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'